When I was a guest on cancer-patients podcast last week, the hosts asked me if we PWDs don’t get frustrated: cancer seems to have all the big celebrities behind it, and make all the big headlines. Does it ever bother your community that diabetes doesn’t get that level of attention? I was a bit dumbfounded. But then I thought of the Children’s Congress. Today, a close look at what some (big AND little) folks are doing to advocate for diabetes…
Ten years ago, 8-year-old Tommy Solo asked his mother why children couldn’t lobby on behalf of themselves for a cure for diabetes. He didn’t understand why only the adults could do this. Tommy’s mother brought that idea to JDRF and, eventually, Children’s Congress was born, with Tommy serving as one of its first delegates in 1999.
Last week, a 150 children, ages 4 to 17, and their parents descended on Washington DC for the fifth biannual Children’s Congress. Among the delegates were several children from five of JDRF’s affiliate international chapters, including England, Australia, Israel, Denmark and Canada. The lobbying event, which usually occurs over the course of four days, was shortened to three this year and was packed with legislative and lobbying experiences for the young delegates.
Pam Ryder, mom of 11-year-old Hannah, was one of the delegates who testified at the Senate Hearing. She explained why she and her daughter wanted to attend: “We had talked to a delegate and his Mom who were at the 2007 Children’s Congress. It sounded like an amazing, empowering experience. For Hannah I was hoping that being around so many other children experiencing the same thing would be helpful – before this experience, she only knew a handful of kids dealing with diabetes. Also, the opportunity to be part of the solution was what convinced me that we needed to do this.”
After arriving on Monday to a Welcome Dinner, JDRF wasted no time getting the delegates to the White House, where they had the opportunity to meet President Barack Obama! Cool! President Obama grinned brightly as he greeted the delegates, and JDRF staff in front of the White House for a photo opp (you can watch video of their meet-and-greet on the Children’s Congress website). After the exciting White House visit, the delegates and their parents had an educational afternoon with a Town Hall event, featuring opening remarks from JDRF International Chairman Mary Tyler Moore. The panel featured Alisa Weilerstein, a professional cellist; Kalilah Allen-Harris, Miss Black USA 2007; Dr. Aaron Kowlaski, JDRF Research Program Director; and Jared Allen, defensive end of the Minnesota Vikings; and was emceed by ESPN sportscaster Brian Kenny. The panelists shared their experiences with diabetes, such as how Alisa and Kalilah handle obstacles while on stage. The Q&A saw Dr. Kowalski answering questions like whether or not a CGM makes one “bionic.”
On Wednesday morning, the delegates and their parents convened for the Senate Hearing titled “Type 1 Diabetes Research: Real Progress and Real Hope for a Cure,” led by Senators Collins and Lieberman. Also on hand were Senators Burris, Akaka, Lautenberg (NJ), Shaheen and Spectar (PA).
The first panel of witnesses testifying were JDRF’s big names: Mary Tyler Moore, Dr. Griffin Rogers, Director of the National Institute of Diabetes and Digestive and Kidney Diseases (NIDDK); Sugar Ray Leonard, an Olympic gold medalist boxer whose father has diabetes; and the one and only pop sensation Nick Jonas.
In his testimony, Nick described his diagnosis while on tour in 2005, after his brothers started noticing his 15-pound weight loss. When he finally saw the doctor, his blood sugar was over 700 mg/dl. Nick recited a verse from his diabetes-inspired song, A Little Bit Longer: “Waitin’ on a cure/But none of them are sure/A little bit longer/And I’ll be fine.”
“Diabetes has changed my life, but I know that I’ve benefited from the government’s investment in diabetes research. With the help of Congress, I’ll only have to wait a little bit longer for a cure,” Nick said. Nick also emphasized that until then, he wanted to be a positive force for diabetes. “I want to show kids with type 1 diabetes – like all the kids sitting with me today – that they can live with diabetes and still make their dreams come true.”
Following that were delegate testimonies from the kids and their parents: Hannah Ryder of Maine, Patrick Lacher of Connecticut, Asa Kelly of North Carolina, and Ellen Gould, mother of four of the delegates, interviewed here last week.
Ellen tugged on the heartstrings of the audience as she described the challenges of caring for four children with diabetes.
“On many occasions, we carefully measure blood sugars, count carbs and inject what we think is the right amount of insulin. It is so discouraging when we measure just a few hours later and their blood sugar is way above normal range. Sometimes we have to deal with the low blood sugars. Like the Saturday morning several months ago when we were awakened by Sam, collapsed in his room, incoherent, because of a dangerously low blood sugar. It took us 20 minutes to get him back to normal – but what happens the next time if we don’t hear him? As their mother, I want to reach out and make it better – but I can’t. I can’t cure this disease. I can’t make it better for my kids. I need help.”
Hannah, the youngest delegate to testify, shared her personal frustrations with diabetes: “Before I could go to school or join a club, we had to have meetings. Sometimes I don’t like all the attention. But I know it is the attention that is going to keep me safe and it is attention like this that is going to help find a cure.”
Pam, Hannah’s mom, wrapped up by describing how Children’s Congress impacted them: “The entire experience will be with us as we continue to fight for a cure. It certainly made us realize that we are not in this alone and that we have some heavy hitters, a great organization, and many determined people fighting with us!”
Thanks to all the delegates, their parents and JDRF for putting on another great event and showing Congress that we are out here and still fighting!